Rogue operators in Australia and overseas are charging thousands of dollars for ineffectual stem cell treatments, a leading stem cell research group has warned.

And Stem Cells Australia says there is a growing number of patients going overseas for stem cell treatments which are limited in Australia.

A loophole in the therapeutic goods legislation means that doctors are legally allowed to treat patients, both here and overseas, with their own stem cells – even if that treatment is unsafe or has not been proven effective through clinical trials.

"They're selling treatment without any proof of benefit, and without any proof of safety," Associate Professor Megan Munsie, a stem cell biologist at the University of Melbourne, told 7.30.

Annie Leverington was diagnosed with multiple sclerosis in 2007.

They're selling treatment without any proof of benefit, and without any proof of safety.

Associate Professor Megan Munsie

She was once a talented flamenco dancer and worked as a court stenographer.

But in 2002 she noticed something was wrong when her fingers started to "drop" during long trials.

Then her feet started to go.

"I noticed when I was walking my dog that I couldn't pick up my left foot - it started to drop after about half an hour of walking," she said.

It has been a gradual decline ever since - getting ready every morning is now a laborious process.

Ms Leverington's husband has to help her with even the most basic tasks – things like blowing her nose or putting her hair up in a ponytail.

"I can get the elastic around so far and then it gets stuck," she said.

"The fingers won't open to put the elastic around to finish it off, so I just get frustrated and put it back down."

Desperate to do something to halt the progression of the illness, Ms Leverington took to the internet.

She discovered the XCell Centre in the city of Cologne in Germany, which treated patients with their own stem cells.

"I felt like I had nothing to lose," she said.

"I wasn't afraid to die. I'm still not afraid to die in the search for a cure, and because of that I went on my own to a country where I didn't speak the language but I felt that was my only option."

Stem cell scammers 'preying on sick people'

But when Ms Leverington arrived at the XCell Centre, things did not seem quite right.

"I was suspicious when I walked in because there was no-one around," she said.

"From the way it had been described on the internet, I expected to see a few more people around - perhaps some people in hospital beds, some occupational therapists, something going on a bit more than what there was."

"But the answer is there are people out there - and I don't understand their own morality - who look at you as a way to make an awful lot of money."

Professor Munsie has now dedicated her work to exposing the scams which see patients billed up to $70,000 for ineffective therapy.

"I think that's what I object most about, the commercialisation of a lot of these treatments," she said.

"The selling of hope and exploiting people who really don't think they have many other choices."

Professor Munsie also issued a warning about the world of internet health, where things were not always as they seem.

"We have to be very aware of Dr Google," she said.

"We also have to be very aware of patient testimonials.

"A lot of these websites, and especially ones from overseas, do use testimonials from patients who've had treatment. It's terrific if they feel they've had benefit, but what we don't know is if it's been for a long time.

"We don't know whether they still really feel the same way.

"Are they even being monitored? A lot of these clinics don't even monitor patients in the long term."

Fears that lessons are not being learnt

Brisbane mother Kellie van Meurs died of a suspected heart attack while receiving stem cell treatment in Moscow for her rare neurological condition known as stiff person syndrome.

Professor Munsie said even now they are not entirely sure what caused Ms van Meurs' death.

"The concern is we don't really know," she said.

"We're not learning from it.

"People are prepared to put themselves at risk to participate in these experimental treatments, but we're not finding out any answers, we're not learning from it."

Professor Weissman said it was highly unlikely the people offering the treatment have the patient's best interests at heart.

"People who go for unproven therapies are at the end of their string essentially," he said.

"And they've given an act of faith essentially that this doctor who promises to cure them will cure them.

"So this is a warning that you can have horrible consequences if you go in for a therapy that's unproven by somebody whose main motivation, I'm afraid to say, is likely to be your pocketbook rather than your health."

Editor's note (August 26): An earlier version of the story suggested that the warnings from leading stem cell researchers about rogue operators were prompted by the death of Australian woman Kellie van Meurs. In fact the warnings issued by these researchers were not prompted by Ms van Meurs' death. The causes of her death remain unclear.